Hair loss: Hi guys. i was diagnosed with SLE a... - LUPUS UK


30,407 members26,983 posts

Hair loss

nada28 profile image
18 Replies

Hi guys. i was diagnosed with SLE a couple weeks ago Over the last couple of months, but defo worst in the last couple of weeks, i have been losing so much hair and its showing up as patches on my scalp. Naturally i had very long thick curly hair and seeing the change has been really hard to cope with. can anyone else relate or any tips that can help reduce the loss

18 Replies
Greentomatoes profile image

Hi Nada28, I was diagnosed with SLE in 2018. I had long dark hair and I felt the bald patches were very noticeable. I got my hair cut short, with some shaved areas, into a funky style. The shaved area hid the bald patches and I felt better about myself because I felt I took back control. Your hair loss may improve when your lupus settles / medication takes effect and you can always grow it back.


GT x

nada28 profile image
nada28 in reply to Greentomatoes

Hi GT,

Thank you so much, happy to hear you found a way that made you feel better! still working on that for myself but thanks this really helped x

KayHimm profile image
KayHimm in reply to Greentomatoes

You have a remarkable attitude, Greentomatoes. What a gift to share with a person struggling with a new diagnosis.

XX k

DorsetLady profile image

This subject is often discussed on the PMRGCAuk forum -this link takes you to a few posts -

You may need to join forum to be able to read, but you can do that and then leave afterwards.

nada28 profile image
nada28 in reply to DorsetLady

Thank you so much I will check it out! x

Alida_Horne profile image

Hi Nada28

Welcome to the LUPUS UK HealthUnlocked Community. We offer a free information pack which you can download or request at:

I also attach below a link to our publication relating to hair involvement in lupus, which I hope you will find helpful.

If I can help further, do let me know.

Kind regards


Tinkabell555 profile image

so sorry to hear this I can imagine how you’re feeling, I had some mild hair loss at the beginning and felt terrified, but ever since it’s settled right down. I’m sure there are shampoos that people on here really recommend, I would do a search on previous posts, apologies I can’t remember the name of it. Sending you lots of love x

nada28 profile image
nada28 in reply to Tinkabell555

thank you so much I really appreciate it - glad its settled for you! <3

Simbob profile image

Hi nada28

Really sorry to hear this. This happened to me at the beginning of my diagnosis. I lost around 50% of my hair and it was very thin and patchy. To begin with I tried to avoid brushing/washing it as little as often. Once my medication was settled my hair loss has decreased and it has grown back. I also used a kertese thickening shampoo. I found it worked for me.

I have a friend who also has alopecia and used dark black castor oil daily which she has found helpful.

I hope you find something that works for you and this settles 💜

nada28 profile image
nada28 in reply to Simbob

Thank you so much <33 I have a thickening conditioner and just started using it so hopefully that has some affect, ive tried the jamaican castor oil but not much effect - maybe i didnt use it long enough. Hope you and your friend are okay now! I defo can relate to avoiding brushing and washing but it has a mind of its own lol🥲 Thanks again xx

Simbob profile image
Simbob in reply to nada28

Hey nada28

You're welcome - I totally understand it would just fall out on its own accord. It has definitely settled now and actually probably one of my first symptoms to start to settle 🤞.

My friends hairdresser said it must be dark castor oil, see how you get on with the shampoo hopefully it'll be helpful. Have you been given any medication?

I hope you're okay, your diagnosis is very new and it's a whirlwind to say the least!! 💜

nada28 profile image
nada28 in reply to Simbob

Thank you so much, this is really reassuring!! <3

Bobbydoodle profile image


I have lupus SLE and APS and at one point I was losing so much hair it was like a bird nest of hair came out every time I washed it.

I now take Hairburst gummies everyday and honestly the loss has reduced so much!

Also if you have had covid that could also be contributing to your hair loss.

nada28 profile image
nada28 in reply to Bobbydoodle

Ahh I'm sorry :( I can very much relate, washing my hair is sooo hard bc of how much comes out - its more each time as well!! Im happy to hear youve found something thats been helping - I'll try those out too. thank you so much :))

Lucylou72 profile image

Hi, I can definitely relate, I was diognosed with lupus and sjogrens recently and have hair loss too, mines worse at the sides of my head, lots on my pillow and in plughole as I'm sure you can relate. At the moment I spray loreal magic retouch on the scalp patches just to blend in with my dark comes in different shades. Just want you to know you are not alone with this and I understand what you are going through xx

nada28 profile image
nada28 in reply to Lucylou72

Yeah thats exactly like me! Its much worse on the sides of my head and my hair is absolutely everywhere (except on my head sigh). Thank you so much, youre so kind and its the same for you, you arent alone either. Its nice hearing from people who can relate! The magic retouch is a really good idea, I am defo gonna get that, thank you so much. hope things get better for you soon xx

SurferGuy profile image

Hi nada,

Sorry to read you're going through this.

I had something similar happen 3 years ago. I only realised when went to the barber and asked for my usual. When he began clippering he said I had patches on the back of my head. When he showed me I was shocked. And the more he clippered the more there were. Bud oddly only on the back and sides of the head.

Both he and the Dr advised using baby shampoo and definitely none of the styling products I use until it's fully grown back. I also moistured the affected area with Abeeno.

And it did grow back after about 6 months 😀

nada28 profile image
nada28 in reply to SurferGuy

Hi Surferguy, thanks so much for your response. Gives me hope! Seems my hair loss is also on the sides and at the back. Glad to hear its grown back :))

You may also like...